The last question.
Entry date: 1st October 2024
It’s been a while since the last post, they spoke about my experience during the hospitalisation which I quoted as my toughest times or that’s what I thought was! Little did I know what was on its way, was way more than the times before ,“THE REALITY!”
I was discharged during the last week of September 2023, i was more than happy to be back home. The thoughts were loud and obvious, “this is it, I did it, no more hospital or need of hospitalisation”. I believed, as I went through it, now I know everything about it.
[ spoiler alert! My knowledge about it was just pea sized]
My search to know about this disorder only increased everyday against my parents wish, they wanted me out of it, but my part of healing were the answers to these!. I went through books, wanted to know people, wanted to know their stories but to my disappointment I found one to none. I felt the longing thus it made me to build this platform, for the silent warriors, for the once who thought they’re alone and I wanted to be their voice.
I was pampered at the hospital, the doctors were just a call away, major discomforts were always addressed immediately and was out of the way even before the mind could register it. But being home was completely different, everything was raw, the world felt so real suddenly. It was no longer just me going through it, it was my loved ones, suffering along for the hope of it all. As much as hope living within us, fear was always at the gate, fear was in our eyes, fear was at the table of decision.
I felt like:
smelling the corners to find the scent of vulnerability,
wanting to invade every bit of me.”
My parents never feared about the judgments that the society brought neither did they bothered to reach it to my ears. They took turns during nights to take care of me. While using the bathroom in the middle of the night, parents woke up with me and they were concerned after an incident that took place during the admission.
It was the first night I took the sleeping pills and after very long days of sleeplessness I slept well by 9:30pm and woke up in the middle of the night around 11 o’clock to use the washroom, mom helped me to get out the bed and I headed the loo and mom was cleaning the stains on the under pad, the nurse came to check in on me at the same time. I was half awake when I headed to the loo , after using it I tried stepping out but I lost my balance and slipped . I tried to hold the tap but I wasn’t strong enough to hold it tight, from preventing myself hitting hard on floor I tried to lean on the wall but I slipped as my skin rubbed and I fell on the floor very dramatically. I called for mom very softly, she rushed inside to find the wall tiles with blood stain and me on the floor holding to tap, “ I saw her heart skipped a beat ”. The nurse and mom rushed in and lifted me, all I could remember from that night is I climbed up the bed and everything turned dark.
From then it was a one of many terrors that mom turned sleepless about.
In mom’s words, “every time when my body tried to rest, and my eyes shut, the image of you on floor appears. I was living in a thin frame of line between reality and dream.”
Even after taking sleeping pills, I never had a good sleep, some days it was too cold for my skin, other days it was too warm, sleeping on a plastic under-pad was no joke, but it was helping.
Frequent panic attacks made my body restless and many of those days I found mom sitting beside me, giving gentle strokes on my hair, they gave me peace. But they never lasted long, I woke up as soon as the strokes were stopped finding her asleep next to the bed stand. Some nights I begged her to stay with me on the bed holding my hands until i fell asleep , the longing for her presences around me increased everyday, I didn’t wanted to trouble her, but I was helpless.
I turned to a year old baby to her eyes, she bath me, fed me, dressed me, put me to sleep at night and came running inside every time i screamed and cried in sleep. She was my pacifier. They both were my dream catchers.
I binge watched movies and re-watched TV shows. The darkness inside was too real to escape, I needed constant noise around me, to keep me in the existing. My physical health was not well enough to pick a book or to draw. I avoided and pushed everyone away because I was tried of them constantly putting me in a position to explain. I wanted to focus on me for once!
[ note: don’t be too quick to judge someone’s situation, you might wish well, but their position of being only hurts them more.]
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| -RGK |
Our families biggest healing part was a three year old who has no idea what she has done to our lives. Yes! Baby Lasandra ! My little friend from the next door! When I got discharged from the hospital I was terrified to show my face to her, but I remember, her running down the stairs as soon as she heard the car pulled, calling out for me, waving a big Hai! with a board smile. My world started to heal from then. “I felt like a TULIP bloomed in a shattered castle”. The mornings and evenings she spent her time being with us, narrating stories, bring all her toys to play, scheming plans with me to pull my dads leg, giving thousands of hugs to my mother to make her smile, dancing and singing to her favourite songs.
I tried and kept me connected with my sister, called her at every chances I got to see the tiny human in her arms,I wanted to see her very badly I wanted to hold my niece and whisper in her ears that, “Aunt loves you so much! And sorry for not being there.” I got to see her after 6 months, it was a surreal moment. More than all, I witnessed true laughter and joy in home after months. Her innocent smile, funny noises filled the home like no other. Looking her crawl around and admiring her attempts to stand and fall added years to my life. Who might have thought that these two innocents hearts would give us the will to look forward for the next day. Thank you darlings!
[ Life is hard, it is hard in general than the thoughts of escape. The will to let go, the will to hold and the will to stand against all, makes the difference.]
Entry October 5 2024!
[Till now I’ve got admitted four times for four doses of rituximab. And at every dose I observed enormous difference not just the after effect but even during the infusion (immunotherapy).]
It is important to say that, I felt completely new to this planet, as if it never existed! Every climatic change took a toll on my body. The monsoon brought SAD ( seasonal affective disorder) can be said the winter blue, Chennai saw the worst flood so did my mind!
December 8 2023, was an alarming moment! Why? Until then the frequency of new blisters were low, wounds were healing better, I slowly started to switch from under-pad to cotton cloths to sit on a chair. But on the first week of December new erosions were up under the thighs and gradually increased spreading from sides of the thighs to several regions of the body, arms and scalp. For a coupe of days the city was in a complete blackout due to heavy rain and flood. Looking at the increasing speed of blisters like wild fire, worried me and my parents more, I wasn’t able to see the doctor due to the heavy flood, so the review was postponed, it was just five days delayed but by then the wounds turned to crust, that covered my whole thighs and my daily intake of food reduced due to the excessive oral lesions. I was not able to walk, sit or climb stairs. Making a little move gave me horrible pain, it took me thirty to one hour every morning to get myself out of the bed. But I continued trying to walk or take a few steps for hours to keep me mobile.
It was new, because we thought everything was over, (so did many! who knew I was back home after my discharge). We doubted ourselves and questioned every move asking “what went wrong?”. The smell was back, and that started to haunt me, I found no other means than to be hard on myself to keep me going, I shouted at myself , insulted , screamed to me walking, i cultivated fear of myself. Fear of the voices inside the head. By December 18 2023 I got my first booster infusion, it took a very long time for the medicine to kick in, it was not until mid of January I started to sleep well, and not until March end the whole crusting started to clear. These were the period of learning, I learned a lot about me and what was I doing to myself.
The very last question…
I found myself wondering looking at my nieces attempts to crawl and stand on her own, every time she fell, she laughed about it and tried again, some days she hit her head on the floor with the attempts that made her to pause for a bit and look around, we smiled and said “that’s alright love, that’s okay, want to try from the other side of the room?”, or when she cried we pampered her saying,”that’s okay, you did a great job!”. At every situations of these we continued to see everything with joy and admiration, that made me to question myself for the last time, “ What are you doing to yourself? Will you ever speak the way you speak to yourself to the kids, or will you ever treat them in such a way?” I wasn’t able to bare even the thought of being harm to them, then why am I being this harsh to myself, “why do I fear myself ?” The very night when I was struggling to step inside the loo, as a habit I was I pushed myself to get in by using very harsh words, I paused for a moment and promised to myself, this stops here! And I helped myself to the lavatory by repeating to myself, “ I’m sorry for being hard on you, just one more step love and then you can hit the bed and no need to wake up till morning, just a one step!”
I can say, things didn’t turn fine over night, but I changed myself that night, from then till date I never questioned myself “ what or why or did I blame myself”.
I saw the changes it brought to me physically, I slowly started to shower on my own, feed myself, slept without pills and woke up every morning folding the sheets on my own.
Yes! It is a normal routine to all but, once I was a person, once who needed help to lift my own head, today how much ever the pain is I continue to do my routine, I came to an ACCEPTANCE, and I started to believe in me! Sometimes all I needed to hear from myself was,
“ IT’S NOT YOUR FAULT! That’s okay to be loved! ”
February was the last time I questioned myself!
And the answer to the question “What went wrong?
“There isn’t one! It happened, and I need to move on! Love yourself, to heal better !”
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| It’s not your fault, it’s okay to be loved! |
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